I can’t believe it’s the end of May!

Good morning dear friends and welcome to Ceci’s new prayer, support and update page.

We have decided to shut down Ceci’s prayer page on Facebook due to the privacy issues that Facebook has been facing and also to allow anyone access to viewing our updates, even if they do not have a Facebook page.

In the next month I will be going in and deleting the Facebook site and will post here and on our YouTube site only.

If you would like to receive email notifications when me or Ceci post new updates here, please look to the right hand side of this page- for our followers using a computer and subscribe to receive notifications. If you are viewing us from a cell phone or tablet- please look below for the subscribe to receive emails when we post something new 🙂

~~ Now on to an update!~~

Goodness so much has been going on since we last posted. I don’t even know where to start. Well I guess I’ll start with where we are right now.

Ceci had another surgery this past Friday. Yep another surgery 😦 But fortunately it was one that could be done here in town instead of at Children’s Hospital in Peoria.

Her wonderful eye Surgeon that has been caring for her since she was a baby performed surgery on both of her eyes. Her muscles in her eyes have always been a little weak but out of no where she has having a very hard time controlling them and was not able to focus without blinking her eyes over and over. The lose of control so acutely had us all worried that something very concerning was going on. It also lead us to believe that this is where this severe headaches have came from.

So Friday Me and Ceci headed to Unity Point in Moline and she had surgery on both eyes. It was only about a 2 hour surgery and thankfully everything went very well. The doctor only ended up needing to work on her inner eye muscles. Her left eye did hemorrhage but it looks much better even today.

The surprising part was how badly this surgery effected our girl. This was her 50th surgery I believe (yep I am losing count 😦 now a days) and I’m so use to our girl talking calmly to me when i enter the recovery room. But this was way different. I could hear my girl crying before I even entered the recovery room and it got worse from there. She was very upset, confused and just out of it.

Usually when she has surgery it’s at Children’s Hospital of IL in Peoria and she has the same Anesthesiologists, this time she had surgery locally and this Anesthesiologist has never treated her. So I believe that things were very different. It also did not help that her eyes were swollen, hurting and she could not see a thing. It was tough to calm her down and I understand why. I can’t imagine how scary it was waking up to this.

Once she was moved from recovery back to her outpatient room it got worse. She was very dizzy, had a severe migraine, was nauseous and upset about everything. I just wanted to get her home and that proved another feat.

LOL, so this mom did not think it through all the way. Ceci’s power chair weighs so much and I did not think about the fact that she would not be able to drive. Duh mom she cant see a darn thing! LOL it was definitely a mom fail moment. But with alot of upper strength and help from the nurse we were able to get her wheeled into our van and home.

Dad came out to help get our girl into the house and with a dark room, more pain medication and some more ice she slept most of the day away. Saturday was about the same and we spent most of the weekend just resting and making sure she was as comfortable as possible.

She has had to wear sunglasses everyday on and off because certain lights are still too much for her eyes but she’s getting better day by day. She had her post op appointment yesterday with her eye surgeon and he said everything looks like it’s healing very well and within a week or so the stitches should be dissolved. She was happy to hear that because they bother her the most. She said it feels like she has a big piece of hair in her eyes. But she certainly is doing much better than over the weekend.

She only has a few more days left before Summer Break begins so she is looking forward to this time with her friends before the year is over.

We did have a follow up with her peds doctor concerning the Iron issue Ceci has been having and unfortunately her Iron is still low. So we are going to try a high dose of Iron daily and recheck again in a few weeks.  We aren’t really sure what is going on with our girl with this iron issue. But they are keeping on it. The good news about this is that the level did not drop anymore, it just hasn’t risen at all even with the iron supplement she has been taking. More to come on this. Hopefully better news with her recheck.

Ceci is looking forward to the summer for sure 🙂 Her dad bought the kids a big above ground pool to keep them busy this summer and an Angel recently bought her a pool lift to get her safely in and out of the pool for her 13th birthday ❤

This dear friend wanted sis to have a safe way to get in and out since she cant get up a ladder safely, and I’m so grateful that she did. We have been lifting her in and out of the pool and it has taken 2 adults to do it safely and we still worry. Thank you so much dear friend for giving Ceci this ability. She cant wait to spend her summer in the pool once she is cleared from her surgery.

Hehehe 😀 Did ya’ll catch the part where I wrote that Ceci had her 13th birthday. Yep our little girl is officially a Teenager!!! How in the world did this happen LOL.

I remember when she was a teeny tiny little peanut in the NICU weighing less than 5 lbs because she was a preemie. Now she is a beautiful young lady and I’m having a tough time remembering that she isn’t my baby girl anymore. Hahaha but Ceci doesnt have a tough time reminding me that she is 13 now 🙂

Well guys I have so much more to share with you all including pictures but I have to get going for now. My laundry has piled up with the long weekend we had and I need to get caught up with everything.

You can still leave us comments here and you can always message as well using the contact page.

We hope you guys have a wonderful day! Be back soon.

Lots of love and hugs,

Alexis & Cecilia Marie

~Spina Bifida Fighters & Survivor~

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